Our beautiful daughter Emersyn Paige passed away from SMA Type 1 on April 7th,2009 at the age of 7 months old. This blog is dedicated to her life, legacy and spirit and our journey as a family through grief.

Sunday, March 20, 2011

Upsurge of Grief..........

Feeling the anxiety of Emersyn's Angel Date approaching in a few weeks already. Some people think it is just this day that is hard.....for us this day just magnifies a daily pain that we carry with us always. Yes we still love, laugh and feel happiness but it is a different lens by which we view these things....it will always go back to yearning for our child to be part of every step we take on this earth. Our new normal is weekly visits to Emersyn's grave.....does that sound normal to you? Losing our child still and always will take our breath away everyday and we hope people never get used to the idea that Emersyn is no longer with us. It makes us feel just as uncomfortable as it does to you to think about it for even a minute. We will only know the answers to our questions of "why OUR daughter" when the time comes for us to leave this earth but I have to say that no reason for her death will justify her being taken from this earth well before her time. I will not put a silver lining on this one and admitting that actually feels good.

Sunday, March 13, 2011

Emersyn's Entourage - Rebecca Run for SMA 2011 Update!

Attention Emersyn’s Entourage!

The 2010 Rebecca Run for Spinal Muscular Atrophy (SMA) was a tremendous success! For the second year in a row the run sold out with Emersyn’s Entourage leading the way. Emersyn’s Entourage had more than 120 participants racing and raised an incredible $20,000 for her honouree year. Please visit http://www.youtube.com/watch?v=0mchwBQBmjw to view Emersyn’s Entourage shaving it away for SMA in 2010. Overall the Rebecca Run and all teams combined raised more than $165,000 last year alone for SMA research. Thank you to everyone who attended the run and to those who could not attend thank you for sponsoring a runner, walker or roller.

It’s time to set our goals for this year and keep the momentum going! Once again we are hoping to register more than 100 walkers/runners/rollers on Emersyn’s Entourage and raise more than $10,000 in her honour. Please visit Emersyn’s blog www.emersynpaige.blogspot.com for weekly updates.

Everyone who attended last year’s race has shared with us how much they enjoyed the day. Features for this year’s event include:

• Our 2011 Race Honouree is beautiful SMA Angel Marley Ann Guay please visit http://www.rebeccarun.com/marley.html to read more about this precious little girl and her story

• The Rebecca Run is celebrating its 10th anniversary in 2011. The goal for this milestone is to raise more than $200,000, which will help to bring the total to more than $2 million raised between the Rebecca Run and Angel Gala

• “Market Place” where exciting items will be sold with a portion of the proceeds going towards SMA research

• Complimentary Barbeque, healthy snacks and refreshments before and after the race will be provided for all participants thanks to our event sponsors

This year’s race is scheduled for Saturday, July 9th at Fairy Lake in Newmarket, Ontario. The race offers something for everyone: a 1km family walk/run, 3km walk/run or a 5km run/walk. All proceeds from the run are donated to Families of SMA Canada. The early bird race fee prior to April 30th is $30. To register for the race please visit www.rebeccarun.com. All registrations received prior to June 9th will receive a specialized technical t-shirt with our team name on it. Register early to avoid disappointment.

When registering please indicate that you are a part of Emersyn’s Entourage and email emersynpaige@gmail.com to let us know so we can add your name to our team list on her blog. Some great fundraising ideas that our team came up with last year included: dodgeball tournament, book sale, tennis tournament, teacher vs student soccer match, yoga classes, and head shaving!

SMA is the number one genetic killer of children under the age of two. 1 in 6,000 babies is born with SMA and 1 in 35 people carry this killer gene. SMA is just as common as Cystic Fibrosis but only has a fraction of the awareness. We NEED to change this! The Rebecca Run is a major venue to affect change, raise money and awareness for a cure.

Melanie and I would like to thank everyone for your ongoing love and support. Together we can honour and remember precious children like our beautiful daughter Emersyn who have passed away from SMA and those who are here with us today battling this disease, and together we have the power to find a CURE.

Wishing you love, remembrance and hope,

Melanie, Jason and our Angel Emersyn

“You are my wind and I am your light as a feather. You are my water and I am your gills. You are my sky and I am your wings. And I was born with love in my heart because I was promised you” ~ Thisbe’s Promise